Rare Disease Day is a global movement on rare diseases. It works towards fairness in social opportunities, healthcare, and access to being diagnosed and therapies for people with rare disease.
It started in 2008 and has played a critical part in building an international rare disease community.
Rare Disease Day is observed every year on 28th February (or 29th in leap years) – the rarest day of the year.
For more information about Rare Disease Day, please visit:
What is Rare Disease Day? – Rare Disease Day 2024
Rare Disease Day: Neurofibromatosis Type 1 (NF1)
Meet Dean, aged 42. Dean joined Paul’s Place eighteen years ago and is living with NF1. It effects his hands and face, as well as causing a huge number of lumps inside his neck, hip and legs. The lumps inside Dean’s neck have led to two neck operations around his brain stem and spinal cord. The first operation was a success. But the second operation caused further mobility issues.
People with Neurofibromatosis Type 1 (NF1) are born with the condition, which develops later in life. It causes (non-cancerous) lumps to develop along the nerves that may cause a range of symptoms.
As a child, Dean was very physically active. He loved running and riding his bike. As an adult, Dean attended college, but found he was getting progressively tired while walking down the corridors. This is when Dean started using a wheelchair and became more and more dependent on using it to get around.
Dean found inspiration and strength in his father’s story, who worked as a lorry driver, but had an accident and sadly broke his back. His doctor said he’d never walk again, but Dean’s father promised he’d walk the next time his doctor sees him. Through sheer determination, Dean’s father surprised his doctor by walking during a follow-up appointment. This inspired Dean to keep fighting to manage his rare disease.
Since joining Paul’s Place, Dean fully embraces the support services offered including the Short Break programme, which were made possible and accessible to Dean. The holidays included sailing, visiting a tall ship and a trip to the sun in Majorca.
Dean also featured in the first ever naked calendar of adults with physical disabilities in 2006. It got attention around the world while helping to raise funds for the much needed extension at Paul’s Place. The photo shoot encouraged Dean to accept and celebrate his body.
Dean uses Paul’s Place three times a week, which support’s him to manage his NF1 condition. The internal tumours in Dean’s right hip, makes his hip stick out, so he takes medication to numb the pain he feels. In 2012, Dean took a turn for the worse. He had pneumonia in both lungs, a chest infection and meningitis. Dean was put into an induced coma and his family were told to prepare for the worse. Dean said, “I pulled through and I’m still here today”.
Today, Dean enjoys the life enhancing opportunities at Paul Place and feels optimistic about the future. Dean’s very excited about the Paul’s Place move from the cricket club in Coalpit Heath to Shires Way Community Centre in Yate. This means, Dean can get involved with growing produce, running a café and serving the community as a community hub.